All about Xeloda
Comments
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Hi all. Just checking in. Lately, after not really many side effects to speak of, the fatigue is hitting me hard the last two cycles. I've been on X for a year now - so not sure how many "cycles". I think that would be 17 cycles. I just have this overwhelming desire to sleep. But I can't. I work full time. Luckily I work from home - but I work long days, in a very stressful job, lots of conference calls, a million emails from clients - mostly angry clients. I know that's probably part of it, but just physically, if I allowed myself to lay down, I know I'd be out for hours. I have no motivation to do anything, trouble concentrating, etc. Taking a shower feels like a monumental effort. Finding an email from a week ago feels the same way. (And yes, I do have depression - diagnosed LONG before I ever had bc). I take meds for that, so anyway. Just feeling overwhelming fatigue. It sucks.
Once in the beginning, I brought up Ritalin to my MO, and he basically laughed and rolled his eyes. I know I've read on here that it helps others. I'm going to bring it up again. Is anyone else getting soul crushing fatigue from this? Maybe it's just the stress in my life, I don't know.0 -
OK, I took the plunge and got my hair colored on a week "off" Xeloda. It was fine. I went with "inoa" color by Loreal at a local salon. It has no peroxide or ammonia and is moisturizing to the scalp and hair. I had no problem at ALL with it. Hope this is helpful info for someone!
Also, try Gin-gin for stomach issues or nausea. They come in hard candy or semi-chewy -- I get the ginger-caramel combo. Each chew has 30% ginger. You can find them on Amazon. I also drink Yogi Ginger tea twice a day. I didn't have a severe nausea problem, but I did fight with insurance to get approval for the Zofran. But now, with the ginger every day, I don't need the drug! Hope this also helps someone.
I just ordered Emu Oil for the hands. I'm told this helps the MOST of all the possible lotions and creams. Will post how it works when I receive it......0 -
Forgot to also say that I have had major constipation issues on this drug. The only combo that works for me is taking three Senokot S tablets a day, and about 6 magnesium citrate tablets (Thorne) along with my calcium. It's a less "medicated" approach than taking all laxatives. The magnesium is great, because you can scale it up or back depending on the week. Taking a little more than you need.... you'll know! This combo has totally worked for me.0 -
Hi lizlemon -
I don't know how you are working full time through this - I salute you! I am only working one day a week now and that is more than enough for me. I just finished my 2nd cycle of Xeloda and I'm really feeling wiped out. I tried Ritalin; it gave me pretty severe stomach pains, but I have lobular cancer cells in the lining of my stomach, so that could have been the problem for me. I know that it has worked for some people. It's a fairly benign medication with a short half-life, so it is in and out of your system pretty quickly. I would give it a try (unless there is a history of bipolar disorder in your family). Good luck with it!0 -
Hey, Rockinlife, I used to get very constipated on X also - but it seems that after a few months, that went away! So, there's hope! Hi, Mompsych! I took some time off Xeloda when I had not one, but two major abdominal surgeries this spring, early summer (long story), and I started to feel actual ENERGY. I think I had gotten used to the fatigue. Now it seems worse than 'normal'. I think the weather changing doesn't help either. It's cloudy/rainy/cold here in my part of TX now, and I just want to hibernate. I'm just glad I have my hair at this point. I cannot complain really. I just wish everything didn't feel so hard to do, psych myself up for. I pretty much expect a standing ovation when I take a shower. Just seems like a lot of work! :P0 -
Hi, Liz, I was getting really tired after just 2 cycles and my first Aredia treatment, so what I'm doing isn't a cure-all but it helps.
My psych put me on a low dose of Dexedrine, slow release, years ago to help me deal with the depression and fatigue from chronic pain. No, it doesn't help the pain, per se, but it helps me to THINK and DO through the pain. They stopped making the slow release Dexedrine for a while (have since restarted making it), and he put me on Adderall. So I think you're on the right track if you can find a doc to prescribe it.
xoxox
Calico0 -
Great news on the hair job, Rockknife!!! And wonderful suggestions for dealing with nausea!! Thank you!!
xoxox
Calico0 -
Rockinlife, I have been having on again off again issues with the C. I found out it wasn't the Xeloda but the anti-nausea drug Zofran. The pain meds I take on and off also have it listed as a side effect. I found that regular yogurt or probiotic pill tends to help. Glad I'm on 7/7 as it subsides on my week off.
Thanks for the idea of the gin gin, Liz. Found some of our stores sell it locally. I take the supplement when my tummy is off. Can't wait to try it!
Sue
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Hi, I'm new on this thread, have lung mets, done 6 months of Taxol with progression. Going to start on Xeloda now. It's always scary to start on a new chemo so I've been reading all the info here, thank you all!
Can anyone tell me how the 3 week (2 on, 1 off) cycle works, as far as the side effects go? Is there a period in the cycle that you feel better, apart from maybe the week off? I guess because it's a daily thing, most days are probably pretty much the same? I'm trying to plan a trip for Christmas and wondered where in the cycle it would be best to travel and not feel too bad.0 -
Carolben- Unfortunately everyone has a different experience on Xeloda which makes it hard to answer your question. For me, I am good from day 1-9 and then on day 10 it hits. I usually don't feel much better until a about 3 days into my off week. This is a consistent cycle for me. But everyone is different. I am sure you will notice how you respond after a few cycles of Xeloda. A warning however is that the SE can change even from cycle to cycle. The good news is however that most of them will allow you to travel at Christmas without a problem.
good Luck0 -
Carolben I agree with leftfoot - the last few days of your week off or the beginning of the new cycle. I have been on for over 20 cycles now and have had to take a two week break a few times because the drug does build up and the HFS gets unbearable.
LizLemon - the fatigue is definitely a big part of it - I too work from home but have hired a girl to help three days a week so I can do my thing or just rest on tues and Thurs. As long as the Xeloda keeps on working will tolerate the side effects. Hugs girls0 -
Carolben....I really feel pretty good most of the cycle but the fatigue does hit toward the end of the 2 weeks. Nothing that can't be managed though.
I've said before that I've been lucky with the hand/foot.....spoke too soon coz now I have cuts/cracks in one of my hands.....quite painful & not quite sure what to do!
Like Saskie, if it keeps working well I'll take the side effects!
(((Hugs)))
Karen xxx0 -
Anyone feel like their eyeballs are going to fall out? I think people think I'm always crying. Burning that drops doesn't help.0 -
DancingVegg.......my eyes constantly feel like crap!! They either feel itchy, watery, gluggy or puffy....I even get a bit of conjunctivitis at night!
I thought it was just me & was starting to look at creams etc I was using on my face.
Sounds like it's just yet another side effect....lol
(((Hugs)))
Karen xxxx0 -
Hi Kazie61. I too have been suffering with my eyes. I had the same problem on Taxt. My doctor prescribed Viscotears for the day every 2hrs and Lacrilube for night time. It works for me and although my eyes are red at times they feel more comfortable.Just finished my 4th cycle of X and the lower dose has been kinder with regard to side effects. No toilet problems and hands and feet have improved. See onc on 22nd to get results of ct scan.
Good luck
Xhelen0 -
Carolben, I'm on my third cycle of 2 weeks on, one off. I agree with the others, side effects seem to culminate for the last 3-4 days of the cycle, and then two days for me into the week off I just feel kind of run down and a little nauseous. But then for the rest of the week off, I feel good and HFS gets a little better. My onc told me side effects can change every week, even during the week off. So far, though, I've tolerated Xeloda very well with just a few minor side effects.
The eye thing is weird. I wake up at night and sometimes have to peel open my eyes. They feel so dry. It's worse at night. I've stopped wearing my contact lenses for so many hours during the day, and I went out and got a pair of glasses I REALLY like so that I wouldn't be sad about the contacts. That really helped my self-esteem! You do what you have to do!0 -
Hi All,
Just started cycle number 2. Had extreme fatigue around day 8 of the first cycle (14/7), plus a dry cough. Had blood counts tested and they were still within range to continue. Lost 6 pounds over 14 days. Was told "you have to eat more even if you aren't hungry." If one more person says to drink Boost or Ensure I may slap them (I try to follow an organic diet, so I did add extra protein powder to my smoothies.) Anyway, I finally started to feel better. MO thinks the cough is from enlarged lymph nodes in lungs. 7 days off were great until I got a pneumovax shot on Monday and ended up with a red, puffy arm and a low grade fever. Hope that cycle 2 is a bit more mellow. (Hands and feet no problem, and no big D on cycle 1 either.)
Thanks to all who have written here with great advice and support. Wishing you all minimal SE's and happy days.
Laura0 -
Hi, Laura, you may have given me an explanation for my cough, too. The last scan showed swollen lymph nodes in lungs. Sorry we've got that, but glad you mentioned what your MO said.
I've had the opposite problem with X and am gaining weight. Anybody else had that problem? Maybe I'm in denial about how much I'm eating. That's been known to happen.
My HFS was bad enough that my onc moved me to a 7/7 schedule. My HFS didn't show up until week 2, cycle 2. It's developed slowly, and continues to grow even though I had a washout period of 2 weeks.
xoxoox
Calico0 -
Calico, I am gaining weight, too. I think it's because the X had made not care about food at all so I just eat junk and lay around a lot now. Boo.0 -
Hey, DancingVeggie, I think you're on to something there. Once the route changed from aromatase inhibitors to the oral chemo trail, my attitude went all to hell. It improved a bit with a 50 point tumor marker drop and some improvement in the HFS, but still ain't great. I have managed to keep up my walking, and am back to not having to stop and catch my breath every 1/4 mile, but food abstinence isn't my strong suit.
xoxox
Calico0 -
Thanks, Leftfoot, Saskie, Karen and Rockinlife for the input, much appreciated and helpful. I'm just going to go, most of my time there will be on the week off, and I'll manage in any case. Will be at my sisters, so it'll be very chilled.
My eyes have been giving me problems since the Taxol - dry, burning, itchy, red, watering, the whole lot, I also just use gentle eye drops and try to avoid spending too much time looking at a small screen (i-pod, cell phone etc) as that really puts strain on my eyes.
Oh another question! I've read that X can make you lose your hair, what is your experience of that?
Lovely weekend to you all0 -
So far I've had no eye issues, except from the pain meds. I'll wake up in the night or early morning with very dry eyes. Just finished round 7 (7/7) and made it through another week without any real SE's. Have the dreaded scans on the 18th to see if this stuff is really working. It's been the easiest treatment by far of anything I've done to date.
I too have lost weight. Once I got off the hormone blockers, it came right off. I've slowly lost 30-pounds over the last year and find that I have no real appetite with the Xeloda. I eat a normal/healthy diet and I'll still lose a pound or two with each cycle. I don't eat when I'm not hungry and hope to drop that last 10 pounds before the holidays. Then all bets are off, ha ha.
Do what you feel you can, when you can. I believe that adding one more "to do" to our already toxic schedules isn't in the cards. If you want to diet, then diet. If not, then go have a hot fudge Sunday with extra whipped cream, lol. Yum!
Sue
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Carolben....I was bald as a badger when I started X in February & I now have a full head of quite thick hair....I've had 2 haircuts. I'd say it looks 'normal' now, not like post chemo hair!! It's amazing how much you appreciate having hair after not having any!!
I have no problem with gaining weight.....I go up & down by about 2 kilos every cycle.
As I said I do have awful eye issues & the sun gives me very itchy skin!! My biggest complaint would probably be a constantly running nose.....drives me bloody nuts.....
Milehighgirl....good luck with your scans this week. Hopefully the side effects are all worth it & it's doing the job (((hugs))) Yes, I agree, it is an easy treatment & allows a good quality of life - I hope to stay on it for quite some time yet....fingers crossed!
(((Hugs)))
Karen xx0 -
Just a quick comment about eyes. I was into the eye onc and he said that I had lost the tear layer on my eyes. I've been using regular tear drops but will be switching to preservative free tear drops. Apparently the ones with preservatives will aggravate the problem over time. He also wants me to do 3G of omega - they have good luck with that in other chemo related eye dryness. If there is no improvement in 3 months there are prescription drugs we'll move to next. But he seemed confident the omega 3 would work.
Seems we have lube the eyes as well as hands and feet...lol
Best
Sophie
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Thanks SophieJean that is good to know about the eyes as I have dry red eyes pretty well every day and use visine sometimes twice a day. CalicoCat - I too have been gaining weight on the Xeloda - I think between having to eat food when taking the pills (or I have stomach grief) and the fatigue - still working, don't get a lot of exercise with the HFS. All playing into it.0 -
Kazzie, I've had the constantly running nose, too! Not stuffy or cold-like, just running. Then, I get the chapped septum.0 -
Hope everyone has had a good weekend! I've been up and down with the mets pain. What is everyone doing/taking for your pain? I just started oxymorphone 10 mg 2/day on Tuesday. Still having a lot of pain which woke me up in the night last night. I'm nervous about having to work extra hours this week. Doc. has me off all otc meds so I'm at a loss. Any ideas?
Sue
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DancingVegg.....that sounds exactly like my issue with the runny nose, drives me nuts & can't go anywhere without tissues!!
SophieJean.....thanks for the eye info. My eyelids seem to be constantly itchy & when I wake in the morning they are all gunky & gritty & I look disgusting!!! Once I wash them it's not so bad, obviously just another SE.....but if it's working it's worth it!
I see my GP tomorrow so will see what she suggests....I've been on X for 9 months now & feel like my symptoms are starting to build up....
Have a good day everyone (((hugs)))
Karen xxx0 -
Runny nose here, too! And lower abdominal pain… yowzers.0 -
It looks like I am on a bit of a different plan than most who have posted here. When I received my 2nd diagnosis they put me on Xeloda and Taxotere. I got HFM on day 9 of my first cycle of pills and it was horrible so they stopped me on day 9 and now I only take 4 in the morning and 4 at night for 10 days and then I am off for the remainder of the 21 day period and the fun starts again the night of my Taxotere infusion. I have noticed I am tired on days 4 - 6 like I could sleep 100% of the time and I also work full-time though I can work from the office or from home but like LizLemon there is no way I can lay down in the middle of the day or I would not get anything done. I am not sure if this is a product of the combo I am on or not. I totally have loss of my taste as well until my break on the Xeloda and then my taste returns pretty quickly until we start the process again. I am guessing it was Taxotere that caused my hair loss based on what others have said here and hopefully I do get done with the Taxotere around Christmas and if I stay on Xeloda I will actually get my hair back. I had just got it back and had 3 hair cuts before I had to shave it again - easy come, easy go I guess.
I agree the symptoms are different for everyone but it is good to read what everyone is experiencing. Oh and the runny nose, have it!0
